Are we helping others or are we not?

[Guest guest]

RESPONSE TO NONSUPPORT IN SUPPORT GROUPS ON LINE

Dear Nan, and Friends in Pain,

Thank you for your welcome and for your caring. " Empathy " is not

something we learn it is an inherent emotional principle; meaning you are either

born

with this in your character or not...You my new friend in pain do know and

understand...

As an advocate and researcher but also, someone who can literally die

from pain due to CNS involvement now, and at any " time " tomorrow, tonight, or

two

days from now--the work I do for others is from my heart. God or my Higher

Power has given me knowledge, caring, and love. There is not much they can do

for me; I have one of the top pain specialists in America, and am on adequate

if not abundant opioid therapy, BUT what keeps me going is seeing another in

CIP (or some other chronic illness) have the TOOLS to survive and find " quality

of life. "

So what I do comes from the heart. Some of the controversy occurred when

I presented my " groups " the truth about Neurontin; including the fact that

" deaths " have occurred and that a pharmaceutical company who makes BILLIONS on

this medication alone committed FRAUD and it has been proven in a court of law

numerous times. Let us remember there is NO price paid in a court room to

recover the " loss of even one life " due to physicians working for the company,

salesmen hired with PHD's (presenting themselves as Dr. so and so to physicians

marketing the drug) or the pain and suffering that occurred and does occur to

the many prescribed this medication. When the topic became " excited " on this

particular group I asked it stop, for those given the information and research

facts were given it (by me) for one reason; so that they " might make an

informed choice " when addressing their physicians, and healthcare providers be

told

the truth. As we know many physicians write medications such as this to

avoid writing opioids.

Neurontin:

1. Has never been researched or approved for " pain " or the

manic phase of bipolor disorder.

2. It can cause permanent memory loss.

3. It can cause weight gain that stresses the lumbar spine

in those so afflicted with OA, RSD, ruptures, and the

like as to render " further pain damage and suffering. "

4. It can cause psychosis, depression, anxiety and

actually increase pain.

5. My articles or presentations showed clear proof of this

so those CIPers who are on it could know the

truth and sadly even with all the publicity,

many physicians still do not know the facts...

That in itself is ok. Meaning people in pain do strike out, do attack,

but this became far too heated, and attacking. I was a new member to this

group, and all were told (as I shared here) my background some of my prominent

pain disorders (I am a walking time bomb really my medical history a

battleground

of complexity), and my professional inclination and advocacy. I cannot tell

you an exact number, (nor do I publicize) but I have professionally referred

greater than 200 clients in the past year for pain management throughout the

U.S. and Canada. I run a small pain group which is " closed " due to internet

predators and the like and they are under 20 in number for we preserve a sense

of

" family " and most are " hardcore painers " a few like me, can die from " pain. "

Not to mention there was a party in a former group who cast a " hex " on

myself due to the fact that I believe in God. Her friend (an apparent co mod

who was away from the board for awhile) came on the board and CASTIGATED this

woman that I know from other boards for a number of years, saying she needed a

" head doctor " and this in co mod status. This individual is a viable pain

client (need we send a resume now to participate in on line support) and she had

shared the story of her near death abuse at the hands of her father. Meaning

this individual had many pain syndromes due to this physical abuse and had the

couraage, love, and dignity to " share her story " so that others in the group

benefit. She also in her way advocates for others.

The Owner of the group (also apparently absent for some time) accused me

via email of purporting " heroin " to the group when in fact I had done another

" piece " on Fentanyl (Duragesic patch) being a chemical analog of heroin; in

short breaking down in the system to what is termed " synthetic heroin. " The

Owner then accused me of pushing heroin on her board which, of course, never

occurred. I advocate on a massive scale including for physicians wrongly

accused

and who are jailed for giving proper care to those in NIP (nonmalignant

intractable pain). One stand I make clear to those in CIP is NOT TO GO ON THE

STREET, for in short " we as a group " then become categorized by law enforcement

agenices (DEA) as addicts and as a group become less viable. There is always

hope, there are advocates like me referring folks to proper pain management; the

" street " is not the place for pain relief.

However, this was used to accuse me unjustly of something I am against,

not for. Sadly enough what bothered me the most is this " innocent pain client "

was attacked and some wannabe " co mod " who just announced she is accepted to

" medical school " is publically (the group numbered over 200) attacking and

saying " do you really have pain syndromes and you need a head doctor " to one in

CIP who was open, loving, and caring enough to tell her story. That is what

ended it for me. This is totally damaging and wrong, for any of us who suffer

CIP know that STRESS can increase pain, and the cycle continues. Support

should not have to exist in small closed groups (such as my AnGeLsInPain) to

avoid

such hatred or attack but it makes you consider strongly what this is all

about.

If the Owner had read my posts, reviewed them thoroughly, and also saw

the attack on this innocent individual she would have done the right thing. But

she did not, and potentially destroyed the life of another CIPer, who I have

emailed and asked to join our closed group. This is not a control issue.

Many of us in CIP do feel without proper treatment that PAIN controls us, and I

utilize the Kubler Ross model of grieving, for CIP is a grieving process which

you can overcome, and become stronger from, not less, but MORE.

Nan you speak from the heart. ALL in CIP need this. Support on the net,

or in day to day life must come from those such as you, and I thank you for

your loving and open post to me...

If one must balk at knowledge that can save " even one life " then we as a

group of CIPers will fade rapidly and during the times of DEA witchhunts lose

our pain management and our viability. MANY of us have fought too long and

hard to see this day come.

Thank you Nan, for your post and being you...

Your friend in pain, and God's blessings,

In a message dated 1/21/2005 11:42:29 AM Central Standard Time,

nanday_blue@... writes:

Dear ,

Bless you for saying what needed to be said. I have not been around here

very long and I did not witness what you saw but I am a firm believer that you

should walk a mile in someones shoes before saying a thing!!! Even then any

utterences that come out of your mouth should be empathtic.

If WE CANNOT UNDERSTAND EACHOTHERS CHRONIC PAIN AND SUPPORT ONE ANOTHER THEN

WHO DO WE TURN TO???

Sometimes I stand all alone here, feeling as if I am in a dungeon (at home i

mean). I need to be heard. I am already depressed clinically with bipolar

disorder and if someone told me that I would be devastated.

PEOPLE !!!!!!!!!!!!!!!!!! Would you like to be responsible for someone on the

edge already? Who may go out and take their own life? Worse yet take someone

else with them?

THESE ROOMS AND GROUPS ARE FOR SUPPORT, you know holding eachother up when we

are down, like we may have helped someone else at one time. We should thank

those who have knowledge also that gives us some answers but never should we

just kick someone when they are down.

Sometimes Chat rooms get very cliquey or clicky however you spell it, and you

have personality problems that way. It's just too bad that you cannot leave

that AT THE DOOR.

((((((((((((()))))))))))))))))) You have my support and my friendship

and if I ever do anything to hurt anyone please let me know..... I love you

all, sometimes I don't get to write like I want to but rest assured you are

always in my heart and prayers.

Be well and big HUGS,

Nan in Michigan

Hallenbeck~Sikorsky~ BS,RN,UM,QC

Owner-Moderator

" AnGeLsInPain "

" OneVoiceInPain "

Interqual Certified

Published Psychiatric Researcher

Advocate for those in CIP, HIV, Psychologic Pain

" The Lord Will NEVER push us beyond what we can endure. "